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Can’t Multiple Myeloma Patients, Caregivers & Bloggers Just Get Along?

Home/Can’t Multiple Myeloma Patients, Caregivers & Bloggers Just Get Along?

Can’t Multiple Myeloma Patients, Caregivers & Bloggers Just Get Along?

The “blogosphere” can be a turbulent place. Those of you who passively read sites like mine would be surprised to learn how crazy things can get behind the scenes. For every one comment someone makes publicly on my blog, I get many, many “off the record” e-mails as well—especially when I write about or post an article on a controversial subject like Total Therapy. The last few days have been no exception. Our readers can be passionate—even manic when it comes to supporting their or their loved one’s multiple myeloma therapy choices. And why not? We are talking possible life and death here! Patients, but especially caregivers can get very defensive when faced with the possibility they may have made wrong treatment decision. No, let me re-phrase that: Since there are no “wrong” therapy decisions (We all make the best choices we have available to us—based on the information we have at the time) human nature still insists we defend our choices. It is only human nature to fight for the one you love—and to support the life decisions you have made. You want angry? I’ll give you angry—discover unexpectedly that you or your lived one has cancer! And talk about piling on—later you learn you weren’t presented with or given all of the available treatment options that should have been available to you.

Anyway, back to my original point: Lately, behind the scenes, the therapy debate has become angry and uncivil. Maybe it’s just a sign of the times. Anyone who follows American politics lately has seen first-hand how polarizing and partisan things have become. Many Americans are angry for a whole host of reasons—the economy, foreign conflict, divergent social and religious opinions. Now, some of that seems to be spilling over into debates like “cure vs control.”

I have been accused of not supporting previous statements I have made about the in curability of mm. Please remember I am only the messenger here! I have mm and desperately want someone to discover a cure. But I can hope and dream and wish all I want—that doesn’t make it so! One reason I don’t site or support my statements more often is I don’t want to seem like I am “piling on.” By that I mean, the more I reinforce controversial statements I make, the more I’m identified with those statements. This isn’t an “us vs them” situation. I’m not hoping to be right or rooting for one position or another.

OK—by request—I didn’t have to go far to find a source supporting my “the mainstream medical community doesn’t consider multiple myeloma curable” statement. Remember yesterday’s post from Dr. Rajkumar, myeloma research expert at Mayo Clinic? Dr. Rajkumar states:

Myeloma is generally not considered a curable disease; however, new definitions of cure have been suggested, including operational cure, which is defined as a sustained complete response (CR) for a prolonged period.1,2 Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients.

That’s as liberal an interpretation as you will find. Here are a few more.  From  For the vast majority of us, multiple myeloma is not a curable cancer at this time.   From  There is currently no cure for multiple myeloma.  I could site more examples, but you get the picture.

Researchers and myeloma docs world-wide are all racing to find a cure and improve patient’s quality of life. The bottom line: Let’s not fight over semantics. Let’s not make disparaging statements about another mm patient’s therapy or institution of choice. Let’s all support making mm research as open and transparent as possible—and let’s all thank God that multiple myeloma patients have any choices at all! Take your meds of choice, eat well, exercise and enjoy life the best you can and let the researchers do their thing! We patients and caregivers need to stick together, don’t you think?

Feel good, keep smiling and please be kind to your doctors, nurses, fellow patients, bloggers and caregivers! Pat